Title: National Registry of Veterans with Amyotrophic Lateral Sclerosis

Expected Total Enrollment: 1500

Study start: January 2003

Primary Objective: To identify as completely as possible all veterans with ALS and to collect data, including DNA samples, which will be available for approved studies examining the cause(s) of ALS.

Secondary Objective: To provide a mechanism for the VA to inform veterans with ALS about clinical trials and other studies for which they may be eligible.

Primary Outcomes: Identification of all living veterans with ALS.

ALS is a disease of high priority to the VA, particularly due to ongoing concerns about the health of veterans who served in the Gulf War. Efforts are needed to systematically identify and track veterans with ALS. Accordingly, the Department of Veterans Affairs (VA) is developing a national registry of veterans diagnosed with ALS.

Eligible participants will include all living veterans with a physician diagnosis of ALS. Veterans with possible ALS will be identified through VA medical records, the Veterans Benefits Administration (VBA), and self-referral. Neurologists with expertise in ALS will review veterans’ medical records to verify the diagnosis and determine eligibility. Upon enrollment, veterans will be asked to complete a brief telephone interview. Registry participants will also be contacted by telephone biannually to assess health and functional status. The VA may notify registry participants about clinical trials for which they may be eligible. Registry participants will also be asked to contribute a DNA sample for studies examining genetic risk factors for ALS. (Participation in the DNA Bank is not a requirement for invovlement in the Registry.) A Scientific Review Committee will evaluate all studies that request use of registry data and/or access to Registry participants.

Location and Contact Information: North Carolina Durham VAMC, Durham, North Carolina, 27705

Kelli Dominick, Study Coordinator

ALS@med.va.gov

Phone: 1-877-342-5257 (1-877-DIAL-ALS)

Eugene Z Oddone, MD, MHSc, Prinicpal Investigator

Posted on October 17, 2008